Say What? Surgery?
Aimee, my granddaughter, has cerebral palsy. I’ve been her medical guardian for some time now for her disability-related medical care. Over a year ago it was suggested by several doctors that we consider a baclofen pump for Aimee. This option was thoroughly considered years ago and decided against. But now they do a trial first so we reconsidered the option for an intrathecal baclofen pump (a medication delivery system for the treatment of spasticity).
The decision to proceed was made but the process has been another thing. Months of doctor visits and evaluations by pediatricians, psychiatrists, neurologists, neurosurgeons, orthopedists, and therapists---all concurring that Aimee would benefit. Then there were x-rays, a spinal tap, and MRI’s requiring an anesthetic. Once again, concluding that Aimee was a candidate.
Finally, her parents and I evaluated the facts and made our best decision to move forward with surgery. But then...what? We would have to wait for a surgery date---weeks, maybe months—because it’s an elective procedure. “We’ll call you” they said....and the waiting began.
In the beginning I agreed to take Aimee to all her visits and provide her post-op care since parents both work.. It’s been a challenge for Aimee and she has been a champ through it all. Often verbalizing her fear and trust in me. To the best of my knowledge, I haven’t let her down. I’ve supported her through it all while trying to make it fun and interesting to meet new people and experience new things.
The surgery is Tuesday. We just finished all the pre-op appointments and tests this week and will enjoy the weekend before heading to Oakland Monday for an overnight in the hotel to get to the hospital early Tuesday morning. Aimee understands the surgical process (I’ve been brutally honest) and how the “pump” will benefit her. She’s eager to be able to do more. Last night she told me she would like to “take dancing lessons or play an instrument”. Why not dream? She’s thinking of new possibilities for herself and I support her all the way.
She deserves something special to look forward since her camp week had to be cancelled. Her surprise, after surgery, is a new iPad I’ve set up for her with music, books, videos and games. She loves technology and is eager to learn and do anything new. I think will be able to manage this, and it will be a great opportunity to get her hands working. I’ll keep you posted on it all.
Meanwhile, keep us in your prayers!
Julie .
Sunday, July 18, 2010
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I am a female (age 32) spastic quadreplegic from birth. I did an oral low-dose initially, which produced memory loss which I didn't like. They said the pump would be different. The baclofen pump was advised when I was 17. I had all the eval's done, but it was decided that I was not a good candidate because my lungs and speech are not involved heavily with spasticity. My situation is rather rare, especially since I am a full quad., and I have had many major operations, one being full rods, staples to correct severe scoliosis when I was 12. Another example was of a very intelligent quad my father met on a city transit bus that had the pump, but ultimately had it removed because he had seizures as a side effect. One concern I'd have for Amie is her serum levels of vit. D3. I keep mine at theraputic levels. I also follow the Weston Price nutritional protocol with emphasis on quality of fats, protein, whole-grain carbohydtates. (processed "phoods" no longer have a place in my daily dietary choices) Quad's confined to wheelchairs are less active since we are not ambulatory...so when we get past the "high metabolism teen years" we don't need a lot of carbs. As I have gotten older, it is less carbs/sugar more quality fats/proteins...fresh fruits/vegies, and yes...green grass pastured milk/ milk kefir! In California we still have the privilage of retail milk of this quality. I have met the Farmer (Mark McAfee) and he is one-of-a-kind special! His web-site is organicpastures.com Please include a quality coconut oil in her diet and coconut cream. Even one teaspoon a day is beneficial. High quality fats increase circulation, reduce spasticity, protect the nerves (especially the myelin sheath), protect the endocrine system (hormone health) and generally help keep me healthy despite my disability. At Tropical Traditions.com you will find the coconut fat and red palm oil that I am speaking. (mostly the coconut fat)Also, go to ezinearticles.com and look up Nutrition, Supplementation & Acupuncture Support for Cerebral Palsy written by Dr. Julie TwoMoon. I haven't taken acupuncture, but I do reflexology which is a mild form of that therapy. This article gives good nutrition information, which is rare to find specifically for C.P. I didn't mean to overwhelm or pry into your situation, but it is so rare to find those who advocate and participate in our lives. And yes, my parent advocate, my mother, has been doing for me for 32 years, like you do for your grand-daughter. I will pray that this therapy is a good match for Amie, but if it's not don't hesitate to have it removed. And don't worry...those fats will help protect her body. Wishing you both the best...Alyssa.
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